Sienna’s story

Sienna, from Sheffield, was born prematurely at 34 weeks in April 2011. Her mum, Sara, tells her story:

“When Sienna was born, she was rushed to the Special Baby Care Unit at Jessops. After seven days we came home, but she stopped breathing and went blue, and we went back to the hospital. It was incredibly scary.

“Sienna had some tests, and an operation. After this, she had bilateral vocal cord palsy, and needed to have a tube in to help her breathe, called a tracheostomy. After this, she still wasn’t breathing very well, and we discovered she had bilateral vocal cord palsy, and subglottal stenosis, which is narrowing of her airways. She was taken straight to the High Dependency Unit and was there for 14 months.

“At the same time, my eldest daughter Cordelia was diagnosed with Autism. It was then that we visited Bluebell Wood for the first time. Once a month at weekends, we stayed at Bluebell Wood with Sienna and Cordelia, so the girls could bond. The lights and noise of the hospital were too much for Cordelia, so it was wonderful to be able to spend time peacefully at Bluebell Wood. The girls have a really strong bond; I think this is definitely down to the time they spent together at Bluebell Wood.

“When Sienna was a baby, we were told she would never make a sound. One day when we were at Bluebell Wood, we heard an excited squeal from the trampoline, and when we rushed outside, it was Sienna! That shows just how much she loves it here. It’s the little things they do that make such a huge difference – like the hospice chef always preparing her favourite meal of sausage, chips and peas. He even learnt the sign language for sausage so that he could communicate easily with Sienna.

”At Bluebell Wood, the girls love the music room, ball pool and messy play. Sienna always feels at ease here. She had a difficult time when she started school, as all her friends can run, and don’t have a tracheostomy. Sienna also has a rare type of epilepsy, and has 72 seizures every 24 hours. This affects her mobility and she gets tired a lot. At Bluebell she meets other children like her, and doesn’t feel so different.

“Bluebell Wood isn’t just brilliant fun for the girls – it’s fantastic for me too. At home, I often don’t get more than three hours sleep, and don’t eat until after 10pm. Just to have a hot meal made for me, a bath and a cup of tea means so much. To have someone take over Sienna’s medicine and care, just for a while, is so nice. It really is the difference between keeping my sanity and not. It’s like home from home but better.”

Tilly has hypoxic ischemic encephalopathy, which means she didn’t get enough oxygen to her brain when she was born. Now she comes to Bluebell Wood with her mum, Rebecca, and her big brother, Gabriel, where she loves meeting new people and relaxing in the spa pool.

William is Paul and Michelle’s ‘miracle boy’. Before he was born he had a stroke and spent the first nine months of his life in hospital. Despite facing so many challenges, William has never stopped smiling, and he loves coming to Bluebell Wood.

Mia was a happy, bubbly nine-year-old who was always on the go. In August 2018 she was diagnosed with a rare condition where the body reacts aggressively to an infection, and she died eight days later. Her family spend valuable time together at Bluebell Wood after she passed away.

Four month old Lily died at Bluebell Wood in February 2017 after being born with a rare heart condition. Her mum and dad, Ella and Ryan, call the hospice their lifeline, and they still visit with their son, Oliver.

Chester and Rhianna were born at just 26 weeks old in 2009, and they spent their first year in hospital fighting for their lives. Chester has brain damage and Hirschsprung disease, which means he can’t pass poo normally, and now visits Bluebell Wood for short breaks. His mum and dad, Lisa and Ian, tell his story:

Charlotte Lee calls daughter Gracie her snow baby. Born in January 2009 following a healthy pregnancy, Gracie’s arrival was a few months after young Sheffield mum Charlotte had received the surprise but welcome news that she was expecting. However, over the next few years Gracie had some developmental issues, which led to a sad discovery.

Olivia is a bubbly, chatty teenager who loves singing, and all things Harry Potter. She lives in Sheffield with her mum and dad, Michelle and Russell, and her brothers, Harry and Finley, and loves spending time at Bluebell Wood.

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